“Stronger Together” in action

In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not uncommon.

Andrew and Caroline from Vasculitis Ireland

On Monday, 13 January, over 100 service users, carers, health care professionals, policy makers and representatives from the community and voluntary sector came together to encourage people living with a rare disease in Northern Ireland to take part in a regional involvement exercise.

people living with rare disease, clinicians, policy makers and politicians gathered together

The ‘Living Every Day with a Rare Disease’ event, hosted by the Northern Ireland Rare Disease Partnership in collaboration with the Public Health Agency (PHA) and the Health and Social Care Board (HSCB) took place at Parliament Buildings and was sponsored by Simon Hamilton MLA.

Marie and Cathy from SHINE

The event formally launched the ‘Living Every Day with a Rare Disease’ survey which will inform the development of the ‘Northern Ireland Rare Disease Implementation Plan’. This survey is the first of its kind in Northern Ireland, responses will help shape the way that future services are managed and delivered.

Errol & Marilyn from HDANI, with Gavin McDonnell

Our Chair, Christine Collins said, “1 in 17 people in Northern Ireland are affected by a rare disease at some point in their lives. They may be the only person they’ve ever heard of with that condition. They may have to travel hundreds of miles, and across the sea, to see a specialist. Specialist support in the community can be limited. Individual conditions are rare, but collectively, rare diseases are not. A common feeling is one of isolation. This survey will give people a voice to explain their everyday needs, challenges and the obstacles they face.”

Rosemary from Multiple Systems Atrophy Trust

Launching the survey Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement with the PHA, said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

Fiona, Darryl, Jenna, Dearbhail, Regina

Dean Sullivan, Director of Commissioning at the Health and Social Care Board added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”

Christine Collins, Michael Holden & Alison Wilson

Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference. “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing. There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”